Commentary Race

Where the Safety Net Won’t Catch Us: How Obamacare Fails Black Women on Maternal Health

Elizabeth Dawes Gay

Even with the Affordable Care Act in place, Black women will still be plagued by the chronic stress that comes with simply being Black in the United States.

This piece is published in collaboration with Echoing Ida, a Strong Families project.

Click here for all our coverage of the health insurance exchange rollout as part of the Affordable Care Act.

I am what I like to think of as a “young and fun” 20-something. I am a healthy young adult with a decent education and income, and I feel safe in my neighborhood. But the growing sense of my own mortality haunts me. Specifically, what haunts me is that I am a Black woman living in the United States, and I hope to create a family by giving birth some day. As a reproductive health advocate, and someone who is particularly interested in maternal health, I am all too aware of the weight of the evidence against me. When it comes to seamless and successful conception, pregnancy, childbirth, and recovery, the odds are not in my favor.

I am the product of a nation in which Black women—regardless of their income or education levels—are more likely than their white counterparts to experience poor pregnancy outcomes.

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  • Overall, the rate of maternal mortality among Black women is three times that of white women (28.4 per 100,000 live births and 10.5 per 100,000 live births, respectively).

  • The rate of maternal mortality among Black women in New York City, at 79 per 100,000 live births, is worse than that of some of the most under-resourced countries.

  • Black women are also more likely to give birth prematurely and to have infants with low or very low birth weight.

  • Black women are two times more likely to suffer from severe maternal morbidity than their white counterparts.

Racial disparities in maternal health outcomes are intolerable; yet, they have been tolerated for decades. So while reproductive health, rights, and justice advocates celebrate the October 1 launch of open enrollment in the health insurance marketplace, I cannot help but reflect on how the Patient Protection and Affordable Care Act (ACA) fails me and so many women just like me.

It’s fantastic that ACA will put access to health care in the hands of millions more people and provide important preventive services and products, such as contraception, at no cost to the person seeking care. The renewed commitment to preventive health services via the ACA is important and should be celebrated, but not overestimated. While improving access to prenatal health care and maternal health services, ACA ignores the social, economic, and psychological factors outside of the health system that affect health and pregnancy outcomes. These factors are known as social determinants of health.

Simply put by the World Health Organization, social determinants of health are “the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels.” It is this unequal distribution of money, power, and resources that causes the most damage. Unnatural Causes, a four-part documentary exploring the social determinants of health, explains that those inequalities cause sustained exposure to stress, which is toxic to the human body and detrimental to a developing pregnancy.

As shown in the second episode of Unnatural Causes, existing as a Black woman in the United States causes enough exposure to the stress hormone cortisol to become toxic and disrupt normal physiological and biological processes—processes necessary to have a completely healthy pregnancy. Stressors such as neighborhood safety (or lack thereof), unstable or unsafe housing, overt and covert racism and discrimination, low political power, low wealth, and poor or missing social relationships can all affect a woman’s life and health.

In fact, insurance coverage of health-care services are only a small part of a larger and more complex equation that, according to HealthyPeople.gov, also includes the built environment, community context, economic stability, and education. Additionally, data suggests that insurance programs like Medicaid have not helped improve reproductive and maternal health outcomes. Indeed, disparities in adverse outcomes such as low infant birth weight have increased, and disparities in maternal death remain the same, despite advances in medical technology and an improved health-care infrastructure.

What Black women are facing is a problem that even stellar health insurance and health-care access (which ACA does not guarantee) cannot solve. It cannot be addressed by traditional thinking about access to medical care, health, and health policy, because such thinking is inadequate to deal with the problems that our country is facing. Health insurance reform cannot achieve better health outcomes for Black women and their children because it does not work toward justice. Even with the ACA in place, Black women will still be plagued by the chronic stress that comes with simply being Black in the United States.

Reducing and eliminating disparities requires some innovation, creativity, and risk-taking. We have to take a comprehensive, intersectional approach that works to eliminate injustice and, as University of California, Los Angeles OB-GYN Michael Lu and his colleagues say, “undo racism.”

In order to close this gap in maternal health, they believe “[w]e cannot eliminate racial disparities in birth outcomes without addressing racial disparities in education, healthcare, housing, employment, the criminal justice system and the built environment.” The good news is that we can do something. A good place to start is to change public policy.

Only bold policies and reforms addressing institutional and systemic flaws that produce inequality will make the big difference we as advocates seek. This is what reproductive justice advocates understood when they rallied together to change the discourse and take action almost two decades ago. Now, we see many more adopting this intersectional approach in one form or another. For example, the Center for American Progress’ Fair Shot campaign acknowledges the intersection of economic security and reproductive health and signals a shift in the policy approach to health and well-being.

We cannot achieve good reproductive and maternal health outcomes by simply focusing on health-care services. We must have economic justice, social justice, and environmental justice to achieve reproductive justice. And we must have reproductive justice to make progress as a society. We cannot move forward by leaving some communities behind.

Change is challenging, and it takes time, but it is imperative that we make Black women’s maternal health an advocacy and policy priority. We have what it takes to get the work done. We can improve Black women’s maternal health, and when we do the lives of American women will be improved; as Martin Luther King, Jr. wrote, “Whatever affects one directly, affects us all indirectly.”

Let’s start by raising awareness of these egregious disparities and poor health outcomes, and by having a dialogue with advocates and thinkers from other fields. Eventually, we will succeed, and in 20 or 30 years our daughters won’t have to write the same. They can rest assured, confident with the knowledge that their race won’t cost them their lives.

Culture & Conversation Maternity and Birthing

On ‘Commonsense Childbirth’: A Q&A With Midwife Jennie Joseph

Elizabeth Dawes Gay

Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Jennie Joseph’s philosophy is simple: Treat patients like the people they are. The British native has found this goes a long way when it comes to her midwifery practice and the health of Black mothers and babies.

In the United States, Black women are disproportionately affected by poor maternal and infant health outcomes. Black women are more likely to experience maternal and infant death, pregnancy-related illness, premature birth, low birth weight, and stillbirth. Beyond the data, personal accounts of Black women’s birthing experiences detail discrimination, mistreatment, and violation of basic human rights. Media like the new film, The American Dream, share the maternity experiences of Black women in their own voices.

A new generation of activists, advocates, and concerned medical professionals have mobilized across the country to improve Black maternal and infant health, including through the birth justice and reproductive justice movements.

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Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

At her clinics, which are located in central Florida, a welcoming smile and a conversation mark the start of each patient visit. Having a dialogue with patients about their unique needs, desires, and circumstances is a practice Joseph said has contributed to her patients having “chunky,” healthy, full-term babies. Dialogue and care that centers the patient costs nothing, Joseph told Rewire in an interview earlier this summer.

Joseph also offers training to midwives, doulas, community health workers, and other professionals in culturally competent, patient-centered care through her Commonsense Childbirth School of Midwifery, which launched in 2009. And in 2015, Joseph launched the National Perinatal Task Force, a network of perinatal health-care and service providers who are committed to working in underserved communities in order to transform maternal health outcomes in the United States.

Rewire spoke with Joseph about her tireless work to improve maternal and perinatal health in the Black community.

Rewire: What motivates and drives you each day?

Jennie Joseph: I moved to the United States in 1989 [from the United Kingdom], and each year it becomes more and more apparent that to address the issues I care deeply about, I have to put action behind all the talk.

I’m particularly concerned about maternal and infant morbidity and mortality that plague communities of color and specifically African Americans. Most people don’t know that three to four times as many Black women die during pregnancy and childbirth in the United States than their white counterparts.

When I arrived in the United States, I had to start a home birth practice to be able to practice at all, and it was during that time that I realized very few people of color were accessing care that way. I learned about the disparities in maternal health around the same time, and I felt compelled to do something about it.

My motivation is based on the fact that what we do [at my clinic] works so well it’s almost unconscionable not to continue doing it. I feel driven and personally responsible because I’ve figured out that there are some very simple things that anyone can do to make an impact. It’s such a win-win. Everybody wins: patients, staff, communities, health-care agencies.

There are only a few of us attacking this aggressively, with few resources and without support. I’ve experienced so much frustration, anger, and resignation about the situation because I feel like this is not something that people in the field don’t know about. I know there have been some efforts, but with little results. There are simple and cost-effective things that can be done. Even small interventions can make such a tremendous a difference, and I don’t understand why we can’t have more support and more interest in moving the needle in a more effective way.

I give up sometimes. I get so frustrated. Emotions vie for time and energy, but those very same emotions force me to keep going. I feel a constant drive to be in action and to be practical in achieving and getting results.

Rewire: In your opinion, what are some barriers to progress on maternal health and how can they be overcome?

JJ: The solutions that have been generated are the same, year in and year out, but are not really solutions. [Health-care professionals and the industry] keep pushing money into a broken system, without recognizing where there are gaps and barriers, and we keep doing the same thing.

One solution that has not worked is the approach of hiring practitioners without a thought to whether the practitioner is really a match for the community that they are looking to serve. Additionally, there is the fact that the practitioner alone is not going to be able make much difference. There has to be a concerted effort to have the entire health-care team be willing to support the work. If the front desk and access points are not in tune with why we need to address this issue in a specific way, what happens typically is that people do not necessarily feel welcomed or supported or respected.

The world’s best practitioner could be sitting down the hall, but never actually see the patient because the patient leaves before they get assistance or before they even get to make an appointment. People get tired of being looked down upon, shamed, ignored, or perhaps not treated well. And people know which hospitals and practitioners provide competent care and which practices are culturally safe.

I would like to convince people to try something different, for real. One of those things is an open-door triage at all OB-GYN facilities, similar to an emergency room, so that all patients seeking maternity care are seen for a first visit no matter what.

Another thing would be for practitioners to provide patient-centered care for all patients regardless of their ability to pay.  You don’t have to have cultural competency training, you just have to listen and believe what the patients are telling you—period.

Practitioners also have a role in dismantling the institutionalized racism that is causing such harm. You don’t have to speak a specific language to be kind. You just have to think a little bit and put yourself in that person’s shoes. You have to understand she might be in fear for her baby’s health or her own health. You can smile. You can touch respectfully. You can make eye contact. You can find a real translator. You can do things if you choose to. Or you can stay in place in a system you know is broken, doing business as usual, and continue to feel bad doing the work you once loved.

Rewire: You emphasize patient-centered care. Why aren’t other providers doing the same, and how can they be convinced to provide this type of care?

JJ: I think that is the crux of the matter: the convincing part. One, it’s a shame that I have to go around convincing anyone about the benefits of patient-centered care. And two, the typical response from medical staff is “Yeah, but the cost. It’s expensive. The bureaucracy, the system …” There is no disagreement that this should be the gold standard of care but providers say their setup doesn’t allow for it or that it really wouldn’t work. Keep in mind that patient-centered care also means equitable care—the kind of care we all want for ourselves and our families.

One of the things we do at my practice (and that providers have the most resistance to) is that we see everyone for that initial visit. We’ve created a triage entry point to medical care but also to social support, financial triage, actual emotional support, and recognition and understanding for the patient that yes, you have a problem, but we are here to work with you to solve it.

All of those things get to happen because we offer the first visit, regardless of their ability to pay. In the absence of that opportunity, the barrier to quality care itself is so detrimental: It’s literally a matter of life and death.

Rewire: How do you cover the cost of the first visit if someone cannot pay?

JJ: If we have a grant, we use those funds to help us pay our overhead. If we don’t, we wait until we have the women on Medicaid and try to do back-billing on those visits. If the patient doesn’t have Medicaid, we use the funds we earn from delivering babies of mothers who do have insurance and can pay the full price.

Rewire: You’ve talked about ensuring that expecting mothers have accessible, patient-centered maternity care. How exactly are you working to achieve that?

JJ: I want to empower community-based perinatal health workers (such as nurse practitioners) who are interested in providing care to communities in need, and encourage them to become entrepreneurial. As long as people have the credentials or license to provide prenatal, post-partum, and women’s health care and are interested in independent practice, then my vision is that they build a private practice for themselves. Based on the concept that to get real change in maternal health outcomes in the United States, women need access to specific kinds of health care—not just any old health care, but the kind that is humane, patient-centered, woman-centered, family-centered, and culturally-safe, and where providers believe that the patients matter. That kind of care will transform outcomes instantly.

I coined the phrase “Easy Access Clinics” to describe retail women’s health clinics like a CVS MinuteClinic that serve as a first entry point to care in a community, rather than in a big health-care system. At the Orlando Easy Access Clinic, women receive their first appointment regardless of their ability to pay. People find out about us via word of mouth; they know what we do before they get here.

We are at the point where even the local government agencies send patients to us. They know that even while someone’s Medicaid application is in pending status, we will still see them and start their care, as well as help them access their Medicaid benefits as part of our commitment to their overall well-being.

Others are already replicating this model across the country and we are doing research as we go along. We have created a system that becomes sustainable because of the trust and loyalty of the patients and their willingness to support us in supporting them.

Photo Credit: Filmmaker Paolo Patruno

Joseph speaking with a family at her central Florida clinic. (Credit: Filmmaker Paolo Patruno)

RewireWhat are your thoughts on the decision in Florida not to expand Medicaid at this time?

JJ: I consider health care a human right. That’s what I know. That’s how I was trained. That’s what I lived all the years I was in Europe. And to be here and see this wanton disregard for health and humanity breaks my heart.

Not expanding Medicaid has such deep repercussions on patients and providers. We hold on by a very thin thread. We can’t get our claims paid. We have all kinds of hoops and confusion. There is a lack of interest and accountability from insurance payers, and we are struggling so badly. I also have a Change.org petition right now to ask for Medicaid coverage for pregnant women.

Health care is a human right: It can’t be anything else.

Rewire: You launched the National Perinatal Task Force in 2015. What do you hope to accomplish through that effort?

JJ: The main goal of the National Perinatal Task Force is to connect perinatal service providers, lift each other up, and establish community recognition of sites committed to a certain standard of care.

The facilities of task force members are identified as Perinatal Safe Spots. A Perinatal Safe Spot could be an educational or social site, a moms’ group, a breastfeeding circle, a local doula practice, or a community center. It could be anywhere, but it has got to be in a community with what I call a “materno-toxic” area—an area where you know without any doubt that mothers are in jeopardy. It is an area where social determinants of health are affecting mom’s and baby’s chances of being strong and whole and hearty. Therein, we need to put a safe spot right in the heart of that materno-toxic area so she has a better chance for survival.

The task force is a group of maternity service providers and concerned community members willing to be a safe spot for that area. Members also recognize each other across the nation; we support each other and learn from each others’ best practices.

People who are working in their communities to improve maternal and infant health come forward all the time as they are feeling alone, quietly doing the best they can for their community, with little or nothing. Don’t be discouraged. You can get a lot done with pure willpower and determination.

RewireDo you have funding to run the National Perinatal Task Force?

JJ: Not yet. We have got the task force up and running as best we can under my nonprofit Commonsense Childbirth. I have not asked for funding or donations because I wanted to see if I could get the task force off the ground first.

There are 30 Perinatal Safe Spots across the United States that are listed on the website currently. The current goal is to house and support the supporters, recognize those people working on the ground, and share information with the public. The next step will be to strengthen the task force and bring funding for stability and growth.

RewireYou’re featured in the new film The American Dream. How did that happen and what are you planning to do next?

JJ: The Italian filmmaker Paolo Patruno got on a plane on his own dime and brought his cameras to Florida. We were planning to talk about Black midwifery. Once we started filming, women were sharing so authentically that we said this is about women’s voices being heard. I would love to tease that dialogue forward and I am planning to go to four or five cities where I can show the film and host a town hall, gathering to capture what the community has to say about maternal health. I want to hear their voices. So far, the film has been screened publicly in Oakland and Kansas City, and the full documentary is already available on YouTube.

RewireThe Black Mamas Matter Toolkit was published this past June by the Center for Reproductive Rights to support human-rights based policy advocacy on maternal health. What about the toolkit or other resources do you find helpful for thinking about solutions to poor maternal health in the Black community?

JJ: The toolkit is the most succinct and comprehensive thing I’ve seen since I’ve been doing this work. It felt like, “At last!”

One of the most exciting things for me is that the toolkit seems to have covered every angle of this problem. It tells the truth about what’s happening for Black women and actually all women everywhere as far as maternity care is concerned.

There is a need for us to recognize how the system has taken agency and power away from women and placed it in the hands of large health systems where institutionalized racism is causing much harm. The toolkit, for the first time in my opinion, really addresses all of these ills and posits some very clear thoughts and solutions around them. I think it is going to go a long way to begin the change we need to see in maternal and child health in the United States.

RewireWhat do you count as one of your success stories?

JJ: One of my earlier patients was a single mom who had a lot going on and became pregnant by accident. She was very connected to us when she came to clinic. She became so empowered and wanted a home birth. But she was anemic at the end of her pregnancy and we recommended a hospital birth. She was empowered through the birth, breastfed her baby, and started a journey toward nursing. She is now about to get her master’s degree in nursing, and she wants to come back to work with me. She’s determined to come back and serve and give back. She’s not the only one. It happens over and over again.

This interview has been edited for length and clarity.

Commentary Contraception

Zika Threat Shows Urgent Need for Better Contraceptive Access

Julie Rabinovitz

As summer approaches and global officials continue to issue warnings about Zika, U.S. federal and state officials can allocate funds and expand insurance coverage to ensure contraceptive access.

Pressure is mounting on Congress to send President Obama a sufficient spending bill to combat the Zika virus’ spread.

The House and Senate recently passed their own measures, both proposing less than the $1.9 billion the president requested. But now they must work out their differences for the sake of our public health. Currently, none of these proposals include funding for Title X, the federal program that provides low-income people with family planning services, birth control, and other preventive reproductive health services. With the potentially life-changing outcomes that can result from contracting Zika, federal and state action is urgently needed to support prevention efforts and increase access to the full range of contraception available nationwide.

There’s no time to waste. More than 600 people in the continental United States, including at least 150 pregnant women, have already been infected with Zika. This month, a New Jersey infant exposed to Zika was born with the birth defect microcephaly, where a baby’s head is smaller than expected. Many more Americans have been affected in Puerto Rico and other U.S. territories. Local transmission is expected to spike as warmer weather approaches and climate conditions become more favorable to the virus’s primary vector, the Aedes aegypti mosquito.

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The Centers for Disease Control and Prevention (CDC) have reported significant evidence showing links between Zika and adverse pregnancy and birth outcomes, including miscarriage, stillbirth, and fetal abnormalities. Brain damage in Zika-infected babies is proving to be far worse than doctors initially thought. Zika has been found to attack lobes of the fetal brain that control thought, vision, and movement. Exposure to Zika was first considered to be a threat for women in the first trimester only, but there is growing concern about the possibility of maternal-fetal transmission throughout pregnancy.

It has also been discovered that men infected with Zika can transmit the virus to their sexual partners through semen, where the virus is stored much longer than in the blood.

As more individuals learn about the potential health risks linked to the virus, many will want and need services and information to help them effectively avoid or postpone pregnancy. Extensive research already shows the public health value and taxpayer savings associated with preventing unintended pregnancy.

Now with Zika, the stakes are even higher.

Congressional leaders must act without delay to pass a comprehensive Zika funding and preparedness package that includes additional resources for Title X to expand access to reliable birth control, related services, and counseling to low-income and uninsured people. Increased funding for these essential services is needed on the ground now, especially in regions expected to be disproportionately affected by the virus. The threat is particularly worrisome in areas that experience the warmer weather that’s conducive to Zika-carrying mosquitoes.

On the state level, elected leaders across the country should require public and commercial health plans to cover all—not just some—FDA-approved birth control. After the passage of the Affordable Care Act (ACA), California was one of the first states to approve a contraceptive-coverage equity law that codified the spirit of the ACA’s contraceptive mandate, also known as the birth control benefit, by requiring health plans to cover all methods of contraception without cost sharing or restrictions. Maryland recently enacted a similar measure that also requires coverage for vasectomies, and several other states are considering legislation with the same intent. The Zika threat makes passage of these kinds of laws across the country time-sensitive. State Medicaid programs must also adopt reimbursement and coverage policies that break down barriers enrollees may face in accessing the full range of effective contraceptive methods.

Patients must be able to get the method they can use safely and consistently. That means health-care professionals across the country, including those in primary-care settings, must offer all forms of available birth control. Providers need training to support their patients in accessing the contraceptive method that is best suited for their health and reproductive life goals. Even some OB-GYNs can use training on newer methods and updated best practices.

Many unknowns remain regarding the Zika virus, which has quickly become one of the world’s greatest public health challenges. But a concerted and proactive response—that includes improved access to contraception—must be implemented before Zika becomes a national public health crisis here in the United States.